Riley World's 21st Anniversary!!!

Ever since you were little one of your nicknames was Riley-man. Not sure why. It just was. And today you will be 21 years old. You are your nickname.   

I remember when birthdays were not any fun for you. 

And now…you can not wait for your birthday or Christmas or Easter or any other special event. It may have taken you a bit longer but boy oh boy are you ever embracing it now.

I remember when doing any type of group activity was not in the cards. 

And now…you are participating in Special Olympics and “giving it all you’ve got!”

I remember when you had to be put under general anaesthesia to get your teeth cleaned. We did that twice. 

And now…you put it on your visual schedule as if it were just another thing to do on any given day and are a rock star in the dentist chair.

I remember when you were a “particular” eater.  And now…oh wait.   Never mind.

I remember when any sign of crust would be the end of the world. 

And now…not only will you just pick off the offending parts but you will eat grilled cheese sandwiches cut into squares OR triangles. BAM!!

Yes I STILL cut off the crusts but if I happen to miss a spot...you will just pick it off.  :D

In your 21 years…

You have taught me that life is not black and white. It is mostly grey. Not an ugly grey. A nice slate grey. 

And now…there are more rainbows then grey.

You have taught me to live one day at a time. Mostly because that’s all I could handle in the early years of Riley World. 

And now…well…ummmm…I’m still living one day at a time because now you’ve entered Riley World: The Adult Years and it’s scary. Very scary.  

You have taught me to have a sense of humour. Because laughing was a whole lot better than ugly crying. 
And now…I can laugh even more because now there are places that sell beer and wine even on Sundays.

But mostly…you have taught me to be patient. Boy have you taught me. Over and over and over again. You have tested my will to live sometimes.  ;)  
And now…21 years later, I think I am a better person because of you. 

Happy 21st Birthday Riley-Man!  

I Love You, Mom

R's First EVER Track & Field Meet! #SpecialOlympics

If you ever want to be inspired, motivated or are just looking for a reason to smile…attend a Special Olympics event. Any event. It doesn’t matter. The feeling you walk away with will be the same.

Yesterday was Riley’s first ever Special Olympics Track and Field Meet. Now if you know R, you know the idea of racing or competition is not a part of Riley World.

There were three field events (shot put, standing and running long jump) and 9 track events (50m, 100m, 200m, 400m, 800m, 1500m, 3000m, 5000m) including a 10,000m race! That’s 25 laps!! Are you kidding me!!! I don’t think I could walk 25 laps in one go.  

Riley participated in 5 events (shot put, running long jump and the 100m, 200m and 400m races). We were there for 6 hours! This most certainly is a new Riley World Record!! AND we both came home smiling...HUGE!!! I know. SO proud of him!

Since you weren’t able to be there with us, I am going to treat you to a play-by-play of yesterday’s events and lucky you…I have pics AND video for your viewing pleasure.

When we first arrived the group warm-up was in full swing. I was shocked thrilled when Riley was willing to jump right in BY HIMSELF when we spotted some team mates. He even went right to the front of the pack. I have never seen this happen before.

He slipped on the team jersey no problem but preferred to wear his own shorts.  :)

His first event was the 200m race. 

If you can't see the video, click here to watch.

Ummmm…okay, so I may have forgotten to tell him when to stop running or as G commented “Just like a horse race where they take half a lap to slow down and turn around.”  :P

Next came the 100m race. Riley is in the middle lane (wearing sunglasses).

Same as the last time...if you can't see the video, click here.

This time he knew what he was doing. Well…sorta. Notice he looked around before continuing stopping. He makes me smile.  :P

The running long jump was R’s first field event. Note the concentration. Lucky for you the battery started to run low so I only got his first attempt. 

Watch R's first attempt at the running long jump here.

His last running event of the day…the 400m (R's in lane 7 - second from the outside). The video camera’s battery died so I had to use my phone.  :(   It became apparent that Riley prefers to “keep pace” with someone as opposed to run ahead. Such a polite young man.  ;) 

Click here to watch him run the 400m race.

One last event before heading home…the shot put. Just enough battery life to get one last throw. 

Finally....the last video to watch.  :)

Everybody cheers for EVERYBODY! No matter if you finish in front, at the back or somewhere in the middle. No matter how long it takes. No matter what team you are on. Special Olympics is a place where EVERYBODY is a WINNER!!

Law Enforcement Torch Run for Special Olympics

When I got an email on Sunday evening about the possibility of Riley participating in a Torch Run for Special Olympics, I was, as always, a little apprehensive.

Although the “unknown” and Riley World have learned to get along more and more over the years…nothing is ever guaranteed.

Not knowing any details about the run, one of us was ready to run with R. And then the heavens opened up and the angels started to sing. Ok...so it was just my niece who called and said she was available to do this with R. *Phew*   I hate running. 

It turned out to be quite the event. They had a motorcycle escort (7 in all) and as they jogged along busy main streets, traffic was stopped at intersections until they passed through. The route was 5km. A few athletes (Riley included) participated in the last 1km only.

Of course I have pictures.  

Here they come.......Law Enforcement in Black; Athletes in Orange

Believe it or not...this is a VERY busy intersection. You don't see any cars because...haaaalllloooo...
the motorcycle escort!!!  Ask my girlfriend. She was stuck in the area.

Riley was BEAMING and all smiles!!!

The 7 Motorcycle Escort

He was NOT, however, going to hold the Torch.

If you ever have the opportunity to get involved with Special Olympics (as an athlete or volunteer)…DOOOO  IT!!! It is an amazing organization!

Maybe next year Riley will run the entire 5km!  :D

Closure for the Sock Saga...

On the heels of Riley destroying throwing away his black striped socks for reasons I will never know…here is an update that, if you follow us on Facebook, you will already know about. Otherwise ummm…why aren’t you following us Facebook?!?!?

At R's request he went to buy some socks at Walmart with his cousin Sara after work experience. He came home with 2 packs of socks. Socks that he has never, EVER had before. He picked them out, paid for them and seemed quite excited about it all.

Conversation he had later with G over Mr. Noodles:

G: So I hear you bought some new socks today.
R: Yeah I did!
G: Where did you buy them?
R: At Walmart with my cousin Sara.
G: How many did you buy?
R: 2 packs.
G: How much did they cost?
R: *Without hesitation and very confidently*   2 dollars! 

Ummmmm....not exactly. One of the downsides of always using a debit card?!?!?

Keeping my fingers crossed that he will wear them. 

UPDATE:  He has been wearing the NEW socks happily every day since. Then again...there are no other socks in his dresser drawer.  :D

I Surrender......

I only wish the white flag I was waving was on this beach. Then surrendering wouldn’t feel so bad.

Photo credit: MorgueFile

Every so often this autism thing will still come and bite me in the butt. When I least expect it.

I mean I can listen over and over and over ad nauseam and laugh at the appropriate time as Riley scripts the one particular scene from Mrs. Doubtfire where I dared to laugh the first time.

I can even listen to him reciting all 24 DVD’s on his birthday list for 6 months leading up to his birthday.

Hell…I can listen to him grumbling for 21 days that it is “STILL MAY”!  (Remember…as soon as Mother’s Day was over R was ready for June because June means Father’s Day and his birthday.) 

What made me crack this time…socks and pajamas. 

Silly right??

It isn’t often that Riley will initiate a conversation so when he does…I am all ears. 

R:  I want some NEW socks please.

Me:  ?!?!?!?  What kind of socks??

R:  Red and black socks.

Me:  ?!?!?!?  What happened to your socks?

R:  I don’t like them.

Me:  ?!?!?!?

I found this in his bedroom garbage.

He’s been wearing these socks for months. 6 pairs with black stripes; 6 pairs with the light grey stripes. ALL the pairs with black stripes were in the garbage.

When I went to count how many pairs were in there I found this…

Call me perceptive but I think I figured out why he wanted new socks.  ;)

A little while later R initiated another conversation. Two conversations within a 15 minute window???  What the heck?!?!?

R:  I want my hockey pajamas.

FYI:  Riley hasn’t worn pajamas since ELEMENTARY school. He wears shorts and a t-shirt to bed.

Me:  ?!?!?!?  What kind of pajamas??  *Hmmmm…there seems to be a pattern in my questioning*

R:  Blue ones.

Me:  ?!?!?!?  Blue ones??

R:  YES!!  *excited that I surely must’ve understood because I responded with “blue ones”. *

Aaaaaaand I was done. Try as I might there are times that I have absolutely no idea where things come from in Riley World. I want to understand. I really, really do. You may even have some ideas of your own. But...honestly...after 15+ years of Riley World there are times that I just don’t know and frankly…I just don’t care to try and figure it out anymore. Well…at least not about stuff like this.

Why???

Well…in the big scheme of things in Riley World if it’s not a safety issue or health issue…life will keep rolling along regardless of the socks he wears or movies he likes or reasons for either. Having said that…these “things” can still be a trigger FOR. ME.

It’s been a discouraging week in Riley World Phase 2: Adulthood. I had intended to share our plans for the future as they happened. I have been too overwhelmed to do this. I will try harder to let my frustrations out and share some successes along the way so these triggers in Riley World won't wear me down. 

To quote one of R's favourite movie lines...."better out than in I always say."  That or see you on the beach!  :D

Looking for a Job...Ready OR .....Not?!?!?

After 15+ years in Riley World, we have come to grips with the reality that Riley will always need some type of support.

One of the questions we are often asked is whether or not we think R will ever be able to get a job. A paying job. I would like to think at some point…yes. What that would look like is a whole other thing.

Yesterday I needed some help putting 2200 tickets together in batches of 50. In my mind…this was a job for Riley-man!! He is a whiz when it comes to numbers and putting things in order. The only hurdle would be to convince him. 

The conversation went like this:

Me:       Riley…I need your help today.

R:         *giving me the side eye*

Me:       I need you to help me put some tickets in order.

R:         I’ll be whining!

Me:       Well…you can either go out on an adventure with dad or stay home and help me.

R:         *thinking*

Me:       ………

R:         Stay home and help you.

Before you think “oh how sweet…he wants to stay and help you”…no. No. That’s not it at all. Riley will do/say just about anything in order to stay home. This was followed with:

R:         I’LL BE WHINING!!

Me:       If you stay home…no whining otherwise you have to go out.

R:         *speaking quietly*  Just stay home.

A little later at R’s request…the McD’s card was thrown in as an incentive. ‘Doing a good job and no whining’ were the terms of G picking up a medium fries in a small brown bag on his way home.

I set up the tickets, demonstrated what needed to be done and after a few adjustments Riley was on his way. He managed to work for 45 minutes putting together 25 packets of 50 tickets. The only challenge “I” had was R scripting almost the entire time. 45 looooong minutes. Here. Watch and see:

In this next clip you will see where R dropped a couple of tickets and checked the numbers before placing them back on the pile (55 second mark) and how he stopped on his own when he hit 400. Yes I was impressed. :D

After 45 minutes I had had enough I let Riley off the hook. You watched and heard the video right???  

Less than 2 months shy of turning 21, Riley is not ready for all the responsibilities and independence required in getting and keeping a paid job. For now…that’s okay. We will keep working towards this goal through volunteering and work experience. 

NOT an April Fool's Joke...

I’m back-posting.

Not sure why I didn’t think to write a post about it. I think I was in shock. I did post this on Facebook:

I don't mean to brag but we had yet another FIRST in Riley World!! As we were sitting in the waiting room at the doctor's this afternoon I went to fix his hair. He looked at me with guilt written all over his face. I was confused.

R:         I cut my hair.
Me:       What??
R:         It was bothering me....
Me:       Let me see.
R:         *tilts his head down*

And to think I was worried he would never learn to use scissors.

Here’s why I was in shock:

Now most people might look at the picture and say “oh that has happened to us”. Yet I would bet most of those same people would NOT be able to say the same thing happened for the VERY FIRST TIME just 3 months shy of turning 21…yes TWENTY-ONE…as in 2 decades and 1 year.  

In R’s defence…he was in need of a haircut. I had been meaning to give him a haircut for about a week. I did not. My bad.

I will not make the same mistake. Well…I hope not. Just in case I have been prepping Riley that the next time he needs a haircut he is to tell me “Mom…I need a haircut!” before he takes matters into his own hands.

Oh and April 2^nd was Autism Awareness Day. We have plenty of awareness in Riley World so instead I made this meme…

I never realized how white a person's scalp could be.  :P

*UPDATE:  I trimmed up the sides and with a slight comb-over we were able to avoid having to shave his entire head. 3 days later and his hair is growing in nicely. *Phew* 

The Best Advice I've Been Given...

Earlier this week Riley’s other mother and I met for coffee with a mom who is at the beginning of their family’s adventures with autism. We talked about advocating for our child, challenges and strengths of our child and family.

I wanted to write something about our meeting because it brought back so many memories of the early years in Riley World. And then I found this half-written post in my drafts folder. How fortuitous.  ;)  I forgot to mention this piece of advice so hopefully I did not scare her off and she will be back here to read this.

If there is one piece of advice I would give to new families starting out it would be something our pediatrician first said to me “You need to do what is right for YOUR family”. Those words helped us get through the maze of “what to do/what not to do” questions in those early years.

Back in the 1990’s, ABA was THE autism intervention. All I remembered hearing were the horror stories of families losing their homes and getting into debt trying to access this therapy.  O…M…G!!!!!   

If G and I did not agree on a therapy 100%; we looked for something else. Whatever we tried we not only had to be comfortable with it but it had to feel right.  In our gut.  Otherwise…we knew it would not work. Yes Riley would struggle at times but if it ever came to a point of distress for him and the rest of us…we would look in another direction.

There is life beyond autism. Life can not be all about autism. There needs to be a balance.

It was wonderful to hear this new mom talk about wanting to “just be ‘normal’” sometimes whether that meant going out to a restaurant to eat a meal as a family or going out on a date night with her husband. So if you are reading this “mom”…good on you! You seem to already be looking for that balance. I loved how you went to get your child his McD’s Happy Meal to take and eat in the restaurant with you and your husband. Not sure I would’ve thought to do that in the early years. And you did it with respect and dignity for both your child and the restaurant staff.

From my own personal experiences, there will be times when it will be hard not to become cynical or jaded. What is important, in my opinion, is to try not to stay in that place. 

That or......get yourself a cave like I have.   ;)

Foto Fun

Whenever I am on Riley’s blog FB page I can’t help but smile at the cover photo. Now I could leave you hanging or make you go to FB to see what picture I’m talking about but since I update the cover photo every couple of months…here’s the picture I’m talking about. :D

This picture was taken on our holiday this past February when we went cruising in the Caribbean. Now I’m sure you have heard the saying “a picture paints/is worth a thousand words”. I mean doesn’t Riley look happy? Well...relatively happy. And maybe even like he’s having fun?? Well my friends…in Riley World there is much, MUCH more to a picture than what is visible to the naked eye.

One of my early posts was “Autism as a Second Language” where I gave an example of one of the most challenging aspects of Riley World…language/communication. Communication is more than “talking” or “words” but for this post I am just going to give you another Riley World example.

First let me explain that this photo-op was not your usual “stick your head through the hole” setup which, as you can see below, Riley is quite comfortable with…ummm...now.

Oh no. This particular one was on a raised cement platform/stage and instead of holes...you stood behind the stand and aligned your head with a body. Not quite as easy as one might think and definitely "Something Different"!!  No one was around to take a picture of the two of us. No one was around for R to model after. Riley was up there on his own. He was not impressed to begin with so in order to get this done as quickly as possible I decided to direct him with verbal instructions. And as it turned out...many, MANY verbal instructions. TOOOO many verbal instructions. Verbal instructions do not work well in new situations in Riley World. Really....I am not new here.

The heads on the frogs actually dropped down backwards to allow for up to 4 people. 

Instruction 1:     “Go stand behind the board Riley so I can take your picture.”

 This should have been my first clue that verbal instruction was not a good idea.

Instruction 2:      “Riley…go aaa-round (motioning with my arm) to the back.”

He stopped just short of going around to the back. SO not happy!!

Yes…I know I should have just gone up there and physically helped him go behind the board. 

But I wanted to get this over with quickly. ;) 

Instruction 3:     “Riley…keep going aaa-round (again motioning with my arm with much bigger

                        sweeping motions). Go BE-hind the picture.” 

He made it back there but stood a little off to one side. 

So...MORE verbal instructions (4, 5 AND 6).

 Finally R was lined up with the empty frog. 

Only...he was about 3 feet back. 

Instruction 7:     “Riley move forward (motioning with my hand). Keeeep coming. (8 and 9)”

Instruction 10:     When he was finally in position…”Riley put your head through the opening.”

And that’s when this happened...

He bent down to try and put his head through the opening just. as. I. had. asked. 

Only....there wasn't an opening. 

He makes me smile! :D

Oh....and why do prepositions have to be so hard!

Watching from a distance...

Riley’s first Special Olympics experience was 5 pin bowling back in September 2012. Since then he has tried his hand at basketball, bocce, club fit, golf, snowshoeing, swimming and track & field. Some he enjoyed right from the start; some he tolerated in the beginning and now enjoys; some he well…no longer participates in. 

It hasn’t always been this way. Oh no. When Riley was little, going to any type of group activity meant a high probability of a meltdown for him AND an extra trip to the liquor store for me.

This weekend for the first time in a long time, I took Riley to his Special ‘O’ swimming. As I watched I couldn’t help but remember the times when I never thought anything like this (me sitting in the stands watching) would have been possible.

I watched as Riley warmed up. I watched as he followed the instructions...well…as best he could.  :)  I watched as he swam back and forth, over and over again working on his front crawl.

Sure he prefers to look forward instead of to the side when breathing. Sure he prefers to use only one arm. Sure he prefers to dive under the water when he gets tired. Sure I prefer to think he has mastered a “medley stroke”.

Will Riley ever want to compete in a Special Olympics Winter/Summer Games?  Probably not. Racing/competing are foreign concepts in Riley World. He is not competitive by nature and is quite happy to run/snowshoe/swim beside someone as opposed to in front. He's very polite you know. ;)

But…as with all things in Riley World…I will never say never.  

The "Prince" and the Pea

It is a well known fact that our house is cool. And we are not talking cool as in the latest styles. We are talking cool in G terms. As in “put on another sweater” or “grab a blanket” kind of cool.

So it should come as no surprise that we would have lots and LOTS of blankets all around the house.

It was not until I was too lazy couldn't find my usual blanket one evening that I noticed there were no other blankets around. Not a single one. Anywhere.

So I went looking.

I found this…

Riley's bed. Can you say "HOARDER"??

That’s right…7 blankets. AND Riley does not just throw them in a pile on his bed. Oh no. He will carefully spread each individual blanket out so there are no visible lumps or bumps. Why yes the letters OCD do pop into my head. 

Now some individuals with autism may also have Sensory Processing (sometimes called sensory integration) challenges. You may hear of children who respond well to deep pressure or who enjoy a weighted vest/blanket, the weight of sofa cushions or even another person’s body on top of them. When Riley was younger he tried a weighted vest. He used it for a while but he seemed to prefer deep pressure touch/massage.

But like a lot of things in Riley World I thought perhaps things had changed over the years and maybe he now liked the feeling of weight (the 7 missing blankets) on his body. 

And then one night I found him like this…

SO not thrilled that I woke him up. Eeep.

Soooo...apparently Riley IS a HOARDER and I do NOT have to purchase a weighted blanket for him. There is also the possibility that he has been reenacting The Princess and the Pea for the past year?!? Although I have no doubt that Riley would pass the royal test for physical sensitivity with flying colours, perhaps I should place a pea under his mattress just in case he should be included in the line of succession. ;)  

We Went Cruising......Part 2

We haven’t always been able to travel by air. In the early years of Riley World, vacations were spent in the mini van driving for hours on end…prior to built-in video screens…with only read/sing-along cassette tapes blasting through the speakers. If I never hear Hakuna Matata or Circle of Life again I’ll be okay with that.

Travelling by air has been a process and continues to be a process. Different/changing security measures mean no routine. No routine means the unknown. The unknown means anxiety/stress for me…I…I…I mean Riley.

Now remember how I said I was able to schedule 3 flights (all under 3 hrs) with 2 layovers between 2 and 2-1/2 hours and it worked out great going down to Fort Lauderdale? Sadly the same options were not available for the trip home. Oh and to top it off....the nasty bug that had gone through both my sister's and my family had caught up with me on the last day of our cruise. I felt like I had been hit by a Mack truck. :(

Our trip home went something like this:

·         Disembarkation time was 9am.

·         Wait (30 min) for shuttle to Miami airport (1 hr drive).

·         Arrive at airport 3 hours prior to departure.

·         Heading through Security was when the fun began. We have the taking off your shoes part; putting things in the bin part; and walking through the sensor part down pat now. The walk-in screener is ummmm still a work in progress. We both forgot about his sunglasses so R needed further “processing”.  
Note:  TSO – Transportation Security Officer

TSO:           May I see your glasses please?

R:               *Leans into the TSO and looks into his glasses* 

TSO:           *confused look*

Me:             Riley can you give the man your sunglasses.

R:               *grumbling takes them off his head and hands them to the TSO*  HERE.

TSO:           Thank you.

Me:             He has autism.

TSO:           *nods and turns to me*  I’m just going to have to touch his ankle.

Me:             OK.

TSO:           *bends down to pat down his ankle*

R:               HEY! YOU’RE TOUCHING ME! STOP TOUCHING ME!!

TSO:           You’re fine to go. 

·         Pretty sure our gate was in a previously ‘set for demolition but temporarily reopened’ terminal. Only redeeming factor was the Pizza Hut Express for Riley.

·         Our ~3-1/2 hr flight to Chicago was delayed by 30 minutes. We only had a 65 minute layover in Chicago.

·         We had hoped to get a bite to eat in Chicago before our next 4 hr 40 min flight. We were all hungry. By the time we landed we had to go directly to our gate to board. We had to go by restaurants and a great looking food court. We had to settle for the Inflight Menu. *sob*

·         We were the last to board and then waited at the gate for 40 minutes waiting to be de-iced. AUGH! We spent an additional 15 minutes on the tarmac.

·         At about the 3 hr mark R started to become unglued. First it was because I had changed my watch back to our time zone. “Your watch is wrong!” Then he realized it was after 8:30 therefore it was time to change into his PJ’s. “Where are my PJ’s?” Finally almost in tears “I just want to go home.” *sigh*  Me too buddy...me too. He thankfully nodded off until just before we landed.

·         By the time we landed R was done. I was done. We were all done. We were at 14+ hrs since we had left Florida. In Riley World 5-10 minutes of waiting can seem like an eternity. Here’s a little snippet as we waited to get off the plane.

R:    There’s lots of people. *totally annoyed*

Me:  Yes. We need to wait patiently.

R:    Like at Christmas.

Me:  Yes, like at Christmas.

R:    Peeeeeeeople!

At this point 2 of the 3 people in the row ahead of us took a sideways glance at us. J2 later told me that an elderly couple 2 rows in front of us looked back and scowled. After 15+ years in Riley World, I have become better at focusing on Riley and ignoring “the lookers”.

Me:  *I say nothing and place my hand on R’s knee.*

R:    I’m going to PUSH THE PEOPLE!!  *arms outstretched; tenses face and grunts as if pushing*

Me:  We have to wait our turn.

R:    TAKE TUURR-UURRNS!!!!

And then…R started scripting scenes from Caillou (the bane of my existence). I was beginning to crack and remember thinking “LET'S GO PEOPLE!! HE COULD BLOW AT ANY MINUTE NOW!”  I can not remember much else. I was delirious from popping flu/cold medications.  

·         One final layover before our last flight home. On a prop plane no less. While waiting to board I remembered I had yet to pull out my “secret weapon”. What was I thinking?? Why had I not given this to him on the almost 5 hour flight???  Clearly…I was not thinking…ummmm cold medications…haaalloooo. I pulled out a copy of R’s newest obsession the Sleepy Kitten board book from Despicable Me and with that…a sense of calm came over Riley World. He had something to focus on and managed the 75 min flight home without a yelp, screech or grunt...that I was aware of. I was ummmm pretty much passed out for most of the flight.  

As we landed at our final destination 17+ hours later, R was all smiles and said in a most relieved voice “We're home. Are we home? It’s good to be home again.”  Yes Riley…it is good to be home. 

Did you know there is a TSA Cares Help Line for Travelers with Disabilities and Medical Conditions?  There is. Be sure to check it out before you travel.